Dreams Come True Story Contest Submissions

NANN thanks all those who submitted their stories for us to share with our neonatal nursing community.

Sweet Dreams
     A girl dreams of becoming a bride...a couple dreams of becoming parents. But one night in 1986, a couple thought their dream was about to be shattered.
     When labor occurred at 24 weeks, the baby wasn’t expected to be viable. But after she was born weighing only 450 g, she took a few gasping breaths. So the L&D nurse called the NICU team.
     I brought the baby back, placed her on a warmer, and administered oxygen. At that time, these were only comfort measures. The parents were aware of the situation and knew that they would be told as soon as their baby had died.
     Well, this little one started breathing regularly. She was bright pink in the oxygen! The father came in a few hours later, wanting to know why I hadn’t come to tell them when she died. I looked at him, smiled, and said, “Because she is still here.” He came in to see his daughter, touching her ever so gently with his strong hands. He went back to L&D and brought his wife over in a wheelchair. She, too, was overwhelmed with joy.
     I called the doctor, and it was decided to change her plan of care. We put in an IV and weaned the oxygen. She became my primary baby. Needless to say, her parents and I became very close. Amazingly, she never had any complications. She became the star of that year’s NICU reunion.
Having come so close to grieving the loss of their child, these parents truly cherished their little miracle, and they still do, every moment of every day. Their dream really did come true.

submitted by Christine Masini, RN

BumbleBee Miracle
    I heard her dad had said that the perinatologist hadn't expected her to survive the pregnancy.  She did.  Then 'they' said although she had survived to a viable age, she surely wouldn't survive delivery.  She did.  Then, it was that she wouldn't survive the initial surgeries she'd need.  She has.  Kit's an amazing, profound, precious and beautiful blessing of a little girl.  Sparkly, brown eyes and soft, brown curls help make her the picture of an angel  ... and a feisty one! 
    On my first night with Kit (the night I chose to be her night Primary Nurse ... praying this spunky, wee soul would have me), I was astounded.  With impish, delicate features hidden behind ETT,  replogle, leads, dressings and dwarfed by her oscillator... her personality seemed to ooze from her and settle in a bright, soft cloud around her.  Her parents are a main source of her spunk.  Mommy and Daddy were young and worried, but their personalities came alive around her ... even on the rough days.  They stuck close and showered love on her. 
    The first time I saw her dark chocolate  eyes flutter open ... Wow!  I knew she wanted to live.  She also wanted to let us know that she was there.  Medicated heavily for pain and immobilized ... but there, nonetheless.   I knew she'd do it, with God's help.  Omphalocele? Bladder extrophy?  Hip dislocation?  Imperforate anus?  Tethered cord?   Unsurmountable defects, right?  Wrong.  It was like telling a bumblebee, "You can't fly ... it's impossible, all  the laws of science say you can't!!!"  Then watching in wonder as that little bee buzzes here and there, gracefully brightening  the corners of the garden she lights in!
    Kit was in the NICU for months.  She went home with ostomy, tube feedings and surgeries to come.  Mommy brings her to visit and, when she had her other surgeries, we would go to visit 'Her Highness' in PICU.
    I visited her once in pedi , after her bladder repair.  'Herself' was  in bed with hot pink cast from the navel down.  She was surrounded by her toys, Mommy at her side, watching Disney and clutching Elmo!  What a sight ... sticky chubby cheeks and dimples from a lollipops I had brought with me!  Her sweet curly locks spread about her head,  like a tousled little mane.  She couldn't move those legs around, but those wee toes never stopped wriggling!
    I remember her coming to see us when she was about two.  She was trying to master crawling and could scoot across the floor like lightening!  She showed us how she said 'No!'.  Impish grin, dimples deep and forefinger out,  an emphatic finger shake and "No!" (all while scooting in a circle on her tush) ... then a cascade of magical giggles!!!  Dad told me a story about her first Easter.  Mommy had to work, so Daddy was watching Kit.   She's in her Easter dress with Daddy, three uncles, and a friend all around the table playing dominoes.   Suddenly, Kit reached under her frock, pulled off her ostomy appliance and smacked it in the middle of the table.  There was  silence for about the count of three, then mayhem as Daddy picked her up (she, looking quite pleased),  to get clean.  The guys around the table got to deal with her 'statement' about how to spend an Easter Sunday!
    Kit amazes me.  The God given miracle of her astounds me.  I think all of the babies I get the honor of caring for do.  They're unbelievable and whether they live for a minute or survive to go home, I find them all miraculous and precious.  To this day,  I know I heard Kit's message when I felt that amazing baby to nurse interface hook up.  Her message shot clear to my heart.  "Don't you let them say I can't do it ... I will.  Don't you, my advocate, let them bring bad thoughts.  I haven't any need for that!  When one of my neonatologists, on one of my bumpiest nights, tells you 'Natalie, you do  know that nothing good can come of this (motioning towards me in the warmer), don't let him make parents or you give up!"
     I am sure there still may be some 'bumpies' to come, but I can't see Kit giving up!  The last time she visited, she was about 3 years old ... running around, jabbering up a storm and hurling sunbeams at everyone!!!  Oh yes, doctor ... something (someone)  good did come of that!

submitted by Natalie Amescua, RN

     This story is relevant to the professional development of a neonatal nurse from her novice beginning.  The summer of 2004 brought Nancy, a GN, to the Neonatal Intensive Care Unit at our institution after an informative and stellar interview.   This amazing candidate caught the attention of our education coordinator and many senior nursing staff during her orientation period and her progression throughout her orientation leading to board examination and her eventual licensure as a registered nurse. 
     During the didactic and bedside period of her orientation as a GN and an RN, she often led her fellow novice nurses during the question and answer sessions with insightful and erudite responses.  She often recounted these didactic sessions during her bedside nursing orientation period, tying the information that was presented to her with her bedside nursing care.  Nancy continues to marry her academic preparation and clinical care by answering many questions herself and candidly assuring that her colleagues surrounding her agree (as if she is mentoring and validating her peers at the same time, many of which are much her senior in experience and tenure). 
     What we did not know early on was that Nancy is a single mother with a young toddler and herself; a childhood cancer survivor.   Her amazing personal history and tenure as both a student and graduate nurse came through in her orientation period.  Her critical observations and pristine documentation and an ever present eagerness to know the why’s of performance shook up the senior staff so much that we were mandated to re evaluate ourselves as to our own personal standards of performance. 
     What we get from Nancy is something that has been lacking at our NICU for some time and may be lacking in general in nursing.  She is an ideal.  She is a supreme and ultimate model of an ideal nurse.  This example of a neonatal intensive care nurse can be fruited from the young and upcoming population of new nurses and it does not matter at what preparation or at what level the nursing staff is.   What does matter is that if one can strive to achieve her level of spotless and faultless practice, a spirit of hope remains alive especially here at our institution and in the nursing profession.

submitted by Dominick M. Carella RN MSN(c)

     I was six years old the first time I said I want to be a nurse in my first grade class.  My teacher asked me why that was, and I innocently answered, "Because I want to help people."  Nearly twenty years later, the answer remains the same.  Helping people in a time of sorrow, a time of need, a time of joy, drives me to be the best nurse I can be.
     I began nursing school in a Bachelors program right out of high school. I studied hard to make good grades; I told everyone that I wanted to be a nurse to help people, but I never really understood why my ultimate goal was to be a nurse. I did not know where it was I intended to work. I did not know anything about the field of nursing and how many exciting opportunities it held.  I did not particularly enjoy the prerequisite courses to nursing and I even began to doubt that nursing was where I belonged. I questioned my dream, and even looked at other possible careers.
     There was one moment, at around midnight on June 27, 2000 that the answer became poignantly clear to me. On that day, I gave birth to my first child.  She was a perfect, tiny miracle, born two months prematurely.  I sat that night in the Neonatal Intensive Care Unit next to her isolette. I stroked her little body and felt a tremendous surge of guilt; guilt at the thought of what she would go through over the next few months because my body could not tolerate the pregnancy.  Tears began flowing down my cheeks more freely than ever before, and without a word, a nurse walked beside me and placed her hand on my shoulder.  She stood there for over an hour, never speaking a word to me.  She felt my hurt and calmed me.  She was there because she worked the night shift. She was assigned to my daughter by her charge nurse for no apparent reason.  She performed her job with unfailing clinical skills, but her most important job that night was standing with a mother who was grieving the dream of what her child=s life would be.  She saw the same beautiful baby I did, even though the rest of the world may have seen a scrawny little bundle, too small for life. She calmed my hurt simply by being with me.  She later talked to me about what I could expect and eased my fears with her words.  Her presence was a comfort. I knew that with her, and others like her, my daughter would be in good hands while she healed enough to come home to me.  Their tender, loving hands cared for my daughter as if she were their own. They cheered her accomplishments and cried with us over her setbacks.  They were my strength as a parent, but also answered the question that had been burning inside of me. Nursing IS where I belong. It is my hope that someday, I will provide to one person the same comfort the nurse gave me that night. 
     I want to help people...the littlest people. I want to nurse the babies that may not otherwise have a chance at life, and I want to be a comfort to their parents. Nursing is in my heart, and has been forever, even before I knew why.

submitted by Katie Fry

     Our NICU received 30 week preterm twins from a surrogate pregnancy.  Both adoptive parents spoke only French.  Luckily, I remembered some of my French from my birth and was able to help them through their stay with education, translations, and preparation for their flight home.  I have stayed in contact with the family and still exchange pictures of their little ones since they have returned home.  Their dreams did come true, initially in another language, but eventually in their own.

submitted by Louise Garner

Our NICU “Field of Dreams”
      Dreams do come true – for families, for nurses.  The Neonatal Intensive Care Unit (NICU) is virtually a whole “field of dreams” coming true.   Families rejoice as their very preterm and/or ill infants progress towards home through the marvels of their loyalty, advanced technology, and the art and skill of healthcare providers.  NICU nurses also can realize professional dreams coming true by means of education, practice, and mentoring.

     Professional goals and activities carry nurses along a career pathway of dreams, from novice to mature mentor.  In the mid 1900’s, Erickson described “Eight Ages of Man” as critical periods of human psychosocial development. (Erickson, 1963) There are similar stages of development during our professional careers.   Whether we chose nursing as a career early in life or switched paths to become a nurse mid career, we begin with establishing trust and, rung by rung, can advance to the level of integrity.  Within any NICU setting, nurses are practicing at all levels of professional development and have the opportunity to actualize their professional goals and dreams.

     The first task of the new graduate is to establish trust– learn the fundamentals of neonatal nursing and adapt to the unit culture as she relates to co-workers and unit leadership.  She has much to learn but develops a foundation for first level decision making and progresses toward independent performance.  Over the next few years, the nurse gains autonomy, developing technical independence while resources are readily available.  Growth during this period confirms the employee’s trust in the organization and enables her to learn and apply the principles necessary for autonomous performance.  Through education and practice, she develops a better understanding of the NICU baby and progresses to the level of taking initiative or responsibility to address the broad scope of baby and family needs.  She spends less energy on the technical aspect of care and can branch into a more comprehensive model of care.  Assuming responsibility for primary patients or a group of patients and unit committee membership soon give the NICU nurse a sense of industry and accomplishment. She gains confidence in her practice and starts contributing to the advancement of unit practice.  She is essentially a “full service” nurse who can provide comprehensive primary care to almost any baby in her assigned unit.  

     As the NICU nurse continues her practice, she has opportunities to evaluate many avenues of career enrichment and to develop her own skills to become a resource for a subset of babies.  She may establish her identity as an ECMO nurse, a transport nurse, a clinical leader, or resource for a particular group of infants – cardiac, surgical, micro-preemie, or other diagnostic group.  Having now a broader scope of practice and a specialty area of interest, the professional nurse moves into Erikson’s stage of intimacy, able to commit to relationships that foster professional collaboration.  She is comfortable with herself, committed to her profession, and able to support the development of others.  Because of her tenure, knowledge and experience, she is respected and empowered.   As she continues in practice as a role model, she transitions into generativity, beautifully described as follows:
     Generativity, then, is primarily the concern with establishing and
guiding the next generation…(it) is meant to include such more popular synonyms as productivity and creativity, which however cannot replace it. (Erickson 1963, p267)
    The nurse at this level anchors the profession.   Finally, after years of practice, the professional nurse arrives at the state of integrity.   She is everybody’s friend, mother, and advisor.  She grants an historical perspective to a rapidly changing world.   She exudes an air of wisdom and confidence that can inspire younger nurses as they too wend their individual life and professional pathway.

     There is no set time line for professional development because professional dreams must be integrated into life dreams.  In fact, life events – a move to a new community, marriage, pregnancy and childbirth, health issues, or family issues may slow down professional growth or even set it back a stage or two temporarily:  but, look around you, adopt a role model to emulate and a less experienced nurse to mentor and watch dreams come true.   As many of us evaluate our multiple years in the NICU, it is time to nurture the younger generation to be able to assume leadership and advance the practice of neonatal nursing.   We can all have and make dreams come true as we celebrate accomplishments and support each other along our individualized professional developmental pathways.

Erikson, E.H. (1963). Childhood and Society. New York: Norton.
Kimberlin, L.V.S. (1991) “Stages of Professional Development,” unpublished.
Slater, Charles (2003). Generativity Versus Stagnation: An Elaboration of Erikson’s Adult Stage of Human Development.  Journal of Adult Development, 10 (1), 53-65.

submitted by Lois V.S. Gates, MS, RNC

     A 'dream come true' was never what I perceived the services of the Neonatal Intensive Care Unit (NICU) to be over eleven years ago.  I would often wonder what 'those' nurses were getting out of working in a field like 'that'.  I was NEVER going to be a NICU nurse.  I loved Pediatrics.   That is what I did.   That is until one day, I was forced to cross train in the NICU as an Army Nurse.  And then...it started.  As the days went by, I started to understand.  I did not  understand enough to leave Pediatrics, though.  But enough so, when I left the military, I wanted to continue working in the NICU per deim.  Soon per deim turned into a full time job.  I loved watching and taking part in helping an infant grow.  I loved being a part of a family's life, even with the ups and downs.    The part I wanted to have in the NICU just continued to grow.  And wouldn't you know it, despite having my own twins at home, I went to school for my Neonatal Nurse Practitioner. 
     Now, eleven years later.... I finally know.  'Dreams come true' is not about one situation, its about the moment you come to the realization of the importance of what we do.  I have found my moment. 
I am in the process of leaving a wonderful job at Women and Infants in Providence, RI, to start a new one.  Who cares  right?  People change jobs every day!  Well, this new job will take my family and I over 3000 miles away to Portland, Oregon. 
     I THOUGHT a 'dream come true' meant having a parent bring their little one (or ones) back to visit us in the NICU with a smile and a 'thank you, everyone, for everything'.  But, life is a funny thing  especially when your moment comes to you clear across the country.  A place where you know virtually no one. 
     My 'moment' came to me... at a bank.  As my husband and I sat down to open a bank account in our new home town to be of Vancouver, WA.  The representative asked me what was bringing us to the area.  As I told her I would be working at the NICU at Legacy Health Systems, big smile spread across her face, as she turned her chair to show us a picture.  "These are my nephews," she said.  She went on to tell me that they are 1 1/2, born at 23 wks and are doing absolutely wonderful.  At that moment, I thanked her.  I thanked her for sharing her nephews with me.  A picture is not only worth a thousand words, but it gave me 'the moment.'  The moment where I knew that even though I was moving many miles away, my dream had already come true and would continue.  I am fortunate enough to have a career, that no matter where we are or what we do in the NICU, there is someone's life we have all touched.  I did not know this woman at the bank.  But, for the mere fact that I work in a NICU, I was privileged to hear about two beautiful children who I never met.  How lucky can someone get?  It is a privilege that only a certain group have.  I am happy to say that I am part of a group of many that make dreams come true each and every day.

submitted by Monique Hapgood

     Nine years ago as a graduate nurse, I decided medical surgical nursing was the best place for me. Filled with the enthusiasm of finally achieving my goal of becoming a nurse, I hoped for a great experience of caring for a variety of patients. My goal was to develop my skills and become confident as a professional nurse. Within a short period of time my spirit was crushed and this experience turned out to be my worst nightmare. I no longer wanted to be a nurse and was headed back to Wal Mart to beg for my old job back! While wondering why on earth I wanted to be a nurse, it was my mother who reminded me of my desire to help people and she suggested I try pediatrics since I loved children. Well, I thought, “what do I have to lose?” I found myself in the middle of the NICU of a small community hospital. It is here I rediscovered my love of nursing. Never in my wildest dreams did I think I would wind up in a critical care area. As a student I hated the fast pace and intensity of critical care. However, it was in the NICU that I achieved my goal of developing my skills and becoming confident as a professional nurse.
     As the months turned into years, I really began to enjoy my career as a neonatal nurse. Being around the tiny babies and watching them grow made me realize the true miracle of child birth. My desire to have a child of my own and our unsuccessful attempts at becoming pregnant inspired me to start at the beginning of the miracle of child birth and increase my knowledge of conception. After all the research and reading, I was armed with what was thought to be the perfect plan for the path to child birth. More months turned into years and still no baby for me and my husband. While I truly enjoyed my work as a neonatal nurse and teaching parents to care for their newborn infants, I felt something was always missing. I found myself in the position of many of our infant’s parents, faced with making the decision to reach out for reproductive help. This emotional journey helped me to understand what the parents of multiples, as a result of the use of assisted reproductive technology, go through. It was during this time that I left the NICU as being around the babies was too difficult for me. Dealing with the comments made by nurses regarding women who use assisted reproductive technology and end up with premature multiples was even more difficult. Who are we to judge the decisions made by others? Still I continued my fertility treatments fully aware that yes I may have more than one infant and yes they may be premature. My husband and I were prepared to handle it without selective reductioning. We decided that was not an option. Neonatal nurses often wonder why parents make this decision and if they are fully aware of the risks for themselves and the infants. In my case, we were fully aware. It is a decision no one will ever understand without experiencing. Just within a few months, we became pregnant and I missed working in the NICU. I came back to what I loved and through out my pregnancy I worked in the NICU. The journey to motherhood really connected me to my profession as a neonatal nurse. Once returning to work in the NICU after giving birth to a beautiful baby boy, I wanted to be more involved in neonatal nursing. So I started going to neonatal conferences to keep up with the latest changes in the NICU. I also joined several neonatal professional organizations and went back to school to obtain a graduate degree in nursing education. I began to notice how much I enjoyed learning new things and bringing that knowledge back to my unit to share with the staff. Now as a staff development nurse, I am able to share my experience and passion for neonatal nursing with new neonatal nurses as well as contribute to the growth of my facility in the area of neonatal nursing. I play an active role in neonatal policy development and keep current with neonatal standards of care. My professional development as a neonatal nurse has truly grown and continues to grow as I become more involved in the world of neonatal nursing through research as I have submitted my first manuscript for publication. Words can not express how much I love being a neonatal nurse and it is a dream come true for me.

submitted by Urmeka Taylor Jefferson

     I am a Community Health Nurse who has been working with pregnant moms and their (mostly) well babies.  I never had the courage to work with families who had babies with devastating medical conditions.  When I agreed to begin working with them I was blessed to have met a Mom (through the telephone) who had lived in my area and was transferred to Maryland.  (I had tie up some loose ends with her).  She told me her little son (who was about 5 at the time) had never been diagnosed with anything specific, but was dependent on someone else to help him with ALL of the activities of daily living speaking, eating, eliminating, mobility, etc.  She told me the little ones in her housing area (one little girl especially) were picking up sign language and this one little girl could sense what his needs were and communicated this to the others who were playing with him, when they didn't understand.   He was a vital part of their play, wheelchair, language and all, and is smart and creative and all the kids enjoy being together.   As a result of this conversation, I find that every day I am filled with admiration and hope when I encounter families who meet challenges head on, with joy and purpose and love.  I make every attempt to bring their goodness into my practice.  The seed that was planted by that Mother's story is constantly nourished by the families I encounter.

submitted by Maureen Kappler

Jonna’s Journey
     Once upon a time there was a tiny baby born in our unit with a big dream –
to help other tiny babies and their families cope with the stress of preterm birth.
     We are a large Level III NICU teaching hospital in Columbia, South Carolina and on July 11, 2004 we had an extraordinary baby born to us. We had the pleasure of taking care of her and her family from the time she was born, at 1 lb 12 oz, until the time she went home.  Since her birth, this family has not only committed themselves to their daughter, but to all families dealing with preterm birth.
     It all began with the website, www.Jonnasjourney.com, in which her father began a daily journal complete with updates, pictures and even home movies!  The web site outlines their mission - their “Big Dream” for their “Tiny Baby”. 
      “My wife and I had our beautiful little girl removed from her womb at 27 weeks. This tiny 1 lb. 12 oz. wonder has shown me many new things that you cannot imagine.  I need to stress to you that every single moment matters right now. Every single item that we as parents decide for Jonna can implicate results that can be detrimental for the rest of her life. Things matter not just now but the future. Eye problems, lung disease, neurological disorders. You cannot even fathom this experience. We get nothing from a normal baby birth, we just watch powerless. The term is coined “ambiguous loss”. You are grieving due to sorrow of helplessness and you are happy that you had a baby.  Figure that one out.
     It is so hard to explain this to someone who has never experienced it. Your baby has come out, everyone wants to congratulate you, you must feign excitement, because I knew the tough battle to come. I understand once a baby is out and alive, you are supposed to be excited. However, I missed the grand celebration, I missed the handout of goodies, I missed family cuddles, because of this we missed a lot.
     Now what do we gain? Also a lot. We get to watch her grow. We get to watch every milestone. We get the pain of backwards milestones, but we also get the good. Every nurse in NICU will tell you, “This is a roller coaster ride.” I am going to have to come up with a different saying for them, because I like roller coasters and this is nothing like it. I am going to start calling it, freefall drop into different portions of pain. That is more like it.  Simply look at her pictures, she is enduring a lot, but she is coming along.
     I have begun a fund. A fund that will go toward her care and the care of others. I will be giving these funds to other families in the NICU and to the March of Dimes Prematurity Campaigns. I am hoping to soon be an Ambassador for them so we will see where that takes me.”
     They are also the Founders of the “Early Journey Foundation” which is a supportive foundation they developed to raise awareness of the issue of prematurity.  The web site is www.Earlyjourneyfoundation.org.
      “This web site was created to help educate America that prematurity is not a disease, it is a temporary state.  I just want it to bring my message to America. This little girl of mine would not survive in other countries; she would not have survived 25 years ago. But with American education, logic and knowledge, there is a newfound hope for parents and children. This is capable only in America! You have to love this country and you have to love your family and you have to love yourself.  I hope my message comes through as one of hope, prosperity and love. I love this little girl and I hope that you will allow the shining America come through and collectively hope for the outcome to be bright.”  
     This family exemplifies the theme of the NANN 21st Annual Conference “Tiny Babies, Big Dreams”. They have a dream to reach out to others and make a difference in the world.  Without this tiny baby the dream may never have happened and it simply makes our job as neonatal nurses truly worth it.  It makes our dream, to make a difference in the lives of families who have preterm infants, come true.

submitted by Patricia Kenney, APRN, MN

     As a neonatal nurse practitioner and RTS bereavement support person I could not really get my head around losing my first grandchild.  My daughter had a textbook pregnancy and then at 35 weeks gestation she could not feel her son move.  We came up with all kinds of excuses: babies don't move as much near term, he was sleeping, she even "thought" she felt him move but wasn't sure. This went on all the way to the doctor's office. The doctor, a friend of mine, smiled and said mothers' only feel five percent of the baby's movements. His smile disappeared when he put the doppler on her silent abdomen. He quietly asked his nurse to get the ultrsound machine. Our biggest fear was true. My grandson lie lifeless in my daughters womb. SHe sobbed. I couldn't understand this and yet I have not only worked with so many families who have experienced the death of their baby, I taught nurses bereavement classes. Now I didn't know what to do and at the same time I did know what to do.  Thanks to the RTS training and the sensitive staff my daughter was able to get through this time and begin grieving.  Then, a few years a second grandson was on the way. Call it PTSD but I couldn't even shop for this child. The day before my daughter in law's shower my best friend dragged me to the mall to shop for the baby.  After a couple of hours I relaxed and began to enjoy shopping for him.  When I arrived home the answering machine was blinking with several messages.  It was my son telling me that his son was born in a hospital 60 miles from home. I thought this can't be; he is only 27 weeks.  I called the level III hospital in that area and they didn't have a baby with our last name; then it dawned on me and I called back and asked if they were out on transport. Sure enough they were out for my grandson. So not only was he born at 27 weeks without Mom having a chance to get steroids but he was born at a level one hospital.  I got in my car and drove as fast as I could to the hospital.  When I arrived I saw my son; his wife was still at the level one.  They were proud parents, they had no idea what was going through my mind.  I went to see Hunter, my new grandson, all 1200 grams of him.  He was ventilated but weaning since his surfactant. He had a "B" and turned blue, I didn't even notice. I was stunned. We sat vigil and I, of course, thought that I would lose my second grandchild.  Then things turned around, he became more vigerous and fought his endotracheal tube. Soon he was on CPAP and before I knew it the director of my nursery was on the phone making arrangments to move Hunter to our hospital at just a week of age on CPAP. He was hospitalized for 8 weeks but went home healthy.  July 11th he will be six and he is just a delight!!!!!!!!!! He is the star of his class and loves to garden with grandma!

submitted by Christine Kowaleski MSN, CNNP

     Late one night in August I received a phone call at about midnight. I had been working nights in the NICU for the last year. The head nurse was calling to try to get help  for the delivery of quadruplets that was imminent. I rushed over to the  hospital in time for the delivery of the babies. I entered the pell mell of activity rushing  to stablize these tiny lives.
     The father was standing in the middle of unit with a look of astonishment on his face and utter shock in his body. This family had waited so long for this miracle. He listened to the doctor explain about their prematurity, their projected hospital course, and their chances of survival. At best their miracle babies chances of survival was only 50 percent. He stood and tried to comprehend all that was happening  and all that he was hearing but was at a loss as to what to do.  Finally his wife arrived and they look at their tiny sons with tears shining in their eyes. They were escorted over to the most stable child and encouraged to talk and touch their newborn son. All four of their sons were just over a pound and small enough to fit in the palm of their hand. As they watched each child was hooked up to a plethoria of machines and wires that overshadowed the small bodies that they were monitoring. They started to notice and identify the machines and their functions as the nurses and therapists explained what each one did to help monitor and assist their childrens fragile existence. They watched their tiny chest vibrate to the rhythm of the oscillator. They saw the electonic conversion of their heart beats and breathing displayed on a screen keeping track of each and every one. They saw how the pumps kept live sustaining fluid continually flowing at a constant rate. They marvelled at how they were nested and snuggled and repositioned to maintain comfort and stability. It amazed and humbled them that their little miracles fought for life day in and day out. They prayed and thanked their heavenly father for this wonderous miracle of life and for the wonderful caretakers of their children. As the days rolled into weeks and then months they watched as each child encountered   and struggled through their own problems.
      Late one night I was asked to call the parents and have them come to the hospital. One of their young sons had taken a turn for the worse and was quickly decompensating. Upon their arrival the situation was explained and they were asked if they wanted to hold him. His tiny body was enveloped in a soft blanket and with the parents sitting close together they were holding their child for the first time. As his life slowly ebbed away they reassured him that he was loved and would always be theirs. The grief in their eyes was apparent as they hugged and thanked all of us for caring for their small sons. My heart was breaking as I approached the doctor and asked if they could hold their son that I was caring for. He agreed after reviewing his chart. This would be the second child that they were able to hold.
      They experienced good times and not so good times while their remaining children were still in the hospital. As one by one they prepared for their sons to go home with them they would reflect often on the journey that they had made. The elation of finally being pregnant, the shock of finding out there were four, the worry over the problems with the pregnancy, the emergency delivery, and the long months watching, worrying and praying. This journey was going to culminate soon in their sons coming home. This miracle making their dreams come true.

submitted by Teremoana Lowry

     In June of 2003, we were called back for  a delivery of 26 week twins.  The boys, Andrew and William, weighed in at a 1#3oz and 1#1oz.  Wil did well from the start ... but Drew faced many obstacles.  Suffering a grade IV IVH to the right and a grade II on the left, he suffered through a reservoir surgery, followed by a shunt surgery.  Prior to the shunt placement, his head grew to 53 cm.  He arrested numerous times, but always had the fight in him to come back to us.  His mother would amaze me when she said, "Drew will be fine ... for Drew".  She knew he would have limitations, but her love for him was unshakable.   The care he received from his mother rivaled any experience NICU nurse I've seen.  After months in the hospital, Drew finally went home the week before Thanksgiving.  I was invited to his first birthday party last summer.  To my amazement, but not his mothers, Drew was doing amazingly.  He was able to sit up on his own, he interacted with everyone that he came in contact with, he played with his toys and his brother Will.  The only residual that was noticeable from all he had been through was a weakness to his right hand.  His neurologist was stunned with his progress.  After an initial grim prognosis, Drew has grown and blossomed into a happy, healthy boy ... just like his mother knew that he would.

submitted by Annamarie Malfeo

     Throughout my thirteen years as a NICU nurse, there have been many miracle babies, but the one I treasure and really think of a miracle baby is one I never took care of.  This infant, now a grown man is more precious to me then any other because he is my nephew, Brian James De Roo.
     Brian was born the summer of my junior year in college on July 10, 1986 to my brother and his wife.  Brian was about 27 weeks and only one pound fourteen ounces.  At the time, he was the second smallest baby on the unit.  He was hospitalized for thirteen weeks, seven of which was on the ventilator.  He was a fighter from the minute he was born.  He pulled out his ET tube on the way to the NICU from the delivery room.  My sister-in-law used to say he used to like to flirt with the nurses because he always slid to the bottom of the isolette so the nurses would have to go in and reposition him.  Only parents were allowed into the unit, so all I ever saw were his big feet through the window.  On my 20th birthday, my brother held him up to the window so I could see his face for the first time.  When he was finally able to come home, my brother was told that Brian had bronchopulmonary dysplasia and would suffer from chronic lung problems.  Brian, today, is over six feet tall, straight A student, and earned several scholarships to college.  As a wedding gift to me, he played a clarinet solo right before I walked down the aisle.  He now plays clarinet for the University of Cincinnati Marching Band.
     Brian is a true miracle baby and the reason I became a Neonatal ICU nurse.  Until he was born, I never knew neonatology even existed.  A year after I graduated from college, I went into NICU and fell in love with it.  When things would get rough, I used to go for hugs from him and his brother to remind me of why I was doing what I do every day.  Four years ago, the burnout became too much and I retired from the NICU.  However, I missed the babies too much and went back in two years ago.  I am so glad I did because I am happy and love what I do again.
     When I saw the contest on the website, I knew I had to tell Brian’s story.  Brian is my inspiration and I love to brag about him to people.  He and other miracles like him are the reason we do what we do every day of our lives.  Brian is a true miracle and an inspiration to us all.

submitted by Linda Merritt

     My life as an RN in adult ICU changed the day I gave birth to a 27 weeker.  I developed PIH and HELLP syndrome and had to have an emergency C section.  My 1 pound 14.5 oz daughter was born and suffered from RDS.  That was 9 years ago.  8 years ago I made the transition to NICU after 15 years of adult ICU.  My story doesn't end there, I later gave birth to a 31 weeker who was very sick, born by Abruption and had a very rocky start.  He oscillated, was on pressors and had a very large PDA which thankfully closed with INdocin.  Today I am the proud mother of two ex preemies who are thriving and very affectionate.  I guess you could say, I brought my work home with me the day those two were born.  Working in the NICU has allowed me to be more in touch with the feelings and emotions that parents go through every day.    Every day a NICU nurse touches the life of at least one other individual and should be very proud of her/his accomplishments.

submitted by Joanne Pasinski

     I dreamt of being a NICU nurse many times as four out of five of my children were born premature and spent time in a NICU.  A neonatal nurse practitioner impressed me greatly during my last daughter's admission after birth for respiratory distress.  This practitioner always took time to come and talk to me every time I was visiting my daughter.  She was not only concerned about the progress of my daughter, but with my health as well.  On one particular day this NNP came to me, and said very important words to a mother who just wants to take her infant home, "slow and steady wins the race".  I have never forgotten those words of wisdom.  I decided that I wanted to go to nursing school.  This was no easy task with five children three of which not yet in school.  As I attended college my hunger for nursing only grew, which made me work even harder to succeed.  The more I was exposed to nursing on the clinical floor the more I knew, adult nursing was not my calling.  I thought my road to the NICU would be a long one even with college finished.  One of my instructors told me to become a nurse extern in the NICU and hopefully that would help me secure a position as a graduate nurse.  Last summer I spent my time in the NICU at AI DuPont hospital and continued to soak up anything and everything about a surgical NICU, and how to become a staff nurse on a team of such awesome nurses.  I continued to keep my options open by becoming a unit clerk when the summer was over.  I also was able to precept in the same unit as a senior in college.  I worked very hard to maintain a good grade point average and was inducted into the nursing honor society, an accomplishment I am very proud of.  I continued to make sure the nurse manager knew I was extremely interested in being a part of this NICU team.  I must admit to being a thorn in her side until the day she told me I would make a good addition to her team when I graduate.  I am happy to say that I have achieved my life dream.  I am now a staff RN in the NICU, and have one of the most fullfilling jobs imaginable.  Every day I continue to learn as much as I possibly can, and sometimes feel totally inadequate.  I will continue to work hard, learn, and grow as a nurse.  I am proud to be a member of such a dedicated team of nurses.

submitted by Cynthia Pelle

More Dreams Come True Story Contest Submissions

Why Me?
     Our daughter had just turned two years old and our son was two months when the news came: we had to move again.  This was the sixth time in six years we relocated for my husband’s work; this time to a small rural town.  There was a “Regional Medical Center” but no NICU.  “Why me?” I whined.  I am an NICU nurse!  I couldn’t possibly do anything else but quickly learned I was lucky there was even a job opening!   
     Within weeks I was cross trained in Labor and Delivery.  Learning to place IUPC’s and Fetal Scalp Electrodes and read EFM strips was all a piece of cake compared to my first patient with a cord accident.  I watched helplessly as a beautiful term baby girl was born, just seconds from life, now silent and blue.  My NICU nurse instinct kicked in and I did everything I could to comfort this family and help them make memories of precious moments that would have to last them a lifetime.  I wondered how they would ever have the courage to try again and cried all the way home that morning, “Why me?”
     It was a dark snowy night; 15 months later and my turn to work Christmas Eve, AGAIN  (It’s hard to earn any holiday seniority when you move all the time)!  Like a coward, I snuck out the kitchen, through the garage to the driveway so my little girl wouldn’t see me go.  But she was there before I even made it to the car door, begging in the sweetest voice, “M-O-M-M-Y why can you go to the hospital and take care of other people’s babies but you can’t stay home with M-E?  Santa is coming!”   I scolded my husband for letting her escape out the front door in the first place!  I felt so guilty for leaving.  “Why me?” I cried, feeling sorry for myself all the way to work.  I was the only L/D RN on duty. There weren’t any labor patients at first but then we got a call from a nearby town.  A shaky voice on the other end said, “We have this lady who is term with no fetal heart tones and we have no team to deliver an IUFD.  Can you take her?”   Our obstetrician immediately said, “Yes”, giving me instructions to hook her up to the EFM to document the lack of heartbeat and to call him when she arrived. 
     Shortly thereafter, I heard a BIG COMMOTION in the corridor and lots of people crying; no, WAILING is more like it!  What was going on? I wondered how these people knew the back way into labor and delivery.  Then our eyes met and I felt a pain so sharp it pierced my heart to see the same woman who had lost her baby girl just 15 months before.  I couldn’t believe this was happening.  “Please, God, not this family; not on Christmas Eve.  Why me?”  Fighting back tears and biting my lip, I turned the volume on the monitor “OFF” as I explained  to the family, “I am sorry but I have to do this.”   Suddenly there was a chill to every fiber of my body and a stream of hot tears flooded my face!  I turned the monitor volume full blast before anyone heard anything over all the sobbing.  The baby was ROA and there it was… a perfect fetal heart rate tracing!  A big healthy boy came into the world early that morning!  Surely I had witnessed a miracle as I whispered softly all the way home, “Why me? Merry Christmas Everyone!”
     We moved twelve more times over the next eleven years so I learned to work every area of maternal child nursing but the NICU is still my biggest love!  I went on to earn my RNC and a masters degree in maternal child health nursing with a dual role function:  CNS and Educator.  My master’s thesis research was about coping patterns of families’ experiencing newborn death.  Soon after graduation, I was employed in California as an NICU CNS.  My husband and I now have 5 children and live in Tulsa, Oklahoma.  Currently I work full time, teaching obstetrical and neonatal nursing and part time as an NICU nurse.  On a wing and a prayer, with finances from heaven knows where, I am pursuing admission into a PhD program and would like to mentor other RN’s in their journey to becoming NICU Clinical Nurse Specialists

submitted by Sarah E. Plunkett, RNC, MSN, CNS

The Miracle of Baby Caitlin
     Caitlin was born at the Cooley Dickinson Hospital, a small community hospital 20 miles north of our NICU. She was born at term to proud parents Sinat Ly and Sam Som. Dad remembers, “Right after she was born, I knew she was in trouble. One cry and then no sound.”
     Sam told me their labor and delivery story. “The contractions started Friday night. They started coming every half hour. Sinat was in terrible pain. Her midwife said to come in to the Cooley Dickinson Hospital. They put her on a fetal monitor that showed the doctors that Caitlin’s heartbeat would go way down. They admitted us right away. They said an emergency c section was needed. I was hoping for the best.”
     “Caitlin came out in trouble”, he remembered. “I could tell by the look on our midwife’s face that the baby was in trouble.” One of the nurses at Cooley Dickinson caring for this family remembers, “When the baby came out I knew she was in danger”.
     They took the baby to the nursery. Mom was asking the father in their native language, “Where is my baby?” Communication with mom was difficult, as she recently moved here from Cambodia and did not speak English. Dad was fluent in both languages and told mom “she will be o.k.” and to stay calm.
Soon, the pediatrician, met with Sinat and Sam to explain the need to transport their baby to Baystate Medical Center for Newborn Intensive Care.
      The medical team was sent out from our NICU.in Springfeild. I was the nurse on that transport team along with a Neonatal Nurse Practioner and a respiratory therapist. When we arrived, Caitlin was on a warmer.  She looked ominous; pale, meconium stained, and limp. We secured an airway and placed an IV line into the umbilical vein to administered medications and fluids. Surfactant was administered into the breathing tube.
     Dad came in to see his baby and meet us. We showed him the special equipment and reviewed our plan of care. We then placed Caitlin in our transport crib. Caitlin had her first car ride, in the back of an ambulance.
     We arranged for a maternal transport. Mom was brought by ambulance to BMC to recover from her c section and to be close to her baby.
     Caitlin was getting sicker. She had “PPHN”, persistent pulmonary hypertension of the newborn, along with meconium aspiration pneumonia. Caitlin required lots of support. She was on a high frequency oscillating ventilator and nitric  oxide for eleven days. Dopamine and Dobutamine drips were necessary for the stabilization of her extremely labile blood pressure. In addition, frequent administration of other IV medications were required to keep her sedated and to maintain oxygen saturation. On more than one occasion, our team contacted the NICU team in Boston to review Caitlin’s case. They discussed her candidacy for ECMO (extra corporeal membrane oxygenation) and reviewed the management of her very severe pulmonary hypertension.  She was the sickest baby in the unit for quite some time.
     When Dad came in for the first time and saw his baby with all of this equipment, I remember him being very calm. He had a peaceful, trusting presence that was very noticeable. I wondered how he could feel this way being in such an unfamiliar place, considering his new daughter was so acutely ill. I marked that moment in my mind and promised myself to ask him about it later. When asked days later, he told me that he had decided, “Whatever happens happens. She is in excellent hands. I believe in people. We believe in God and in the staff in the NICU.” He added,” every night we pray for the staff here. We have faith in everyone here. The doctors and all of the nurses and their experience. They love kids. They care for the babies. That’s why Caitlin is here with us today.” Trust. Trust was established and maintained. It made all the difference in the families’ ability to cope with having such a sick newborn.
     Caitlin gradually got better. Her lung disease slowly improved, as did her pulmonary hypertension. As Caitlin’s condition improved, so did her spirits. She became interactive with the staff. She would look right into your eyes and make you smile, and she smiled back! She still needed to be with us while she learned to bottle feed.
Throughout her stay, we maintained communication with CDH. Updates were faxed twice a week and we often exchanged phone calls to inform the staff on Caitlin’s progress.
     Trust was built with this family from the beginning of their pre natal care with their mid wife, through to their labor and delivery at a community hospital, right on through to their NICU stay and slow recovery period. That was key to the successful outcome for this family.
     Collaboration was also key. We maintained good communication with the family, acknowledging and working through their language and cultural differences. We maintained good communication with the referring hospital as well with our ECMO center in Boston.
     Caitlin’s stay in the NICU was 58 days. She is now home with her loving family. They were by her side every day, every step of the way. We will never forget the strength and calm spirit of this baby and this family.

submitted by Lynne Schmittlein RNC

     One of my first experiences of working in a Level II nursery was of a wonderful family having twins.  They were having a boy and a girl.  Mom went into premature labor at 32 weeks and was unable to stop labor.  She delivered the twins and the female twin had a velamentous insertion of the placenta and did not make it.  Twin B (boy) was doing fine.  I have never met a family more accepting and loving of what they had and knowing that they had to go to extremes (IVF) to get here.  They were very strong Catholics and God played a big part in their grieving process.  It was the first time I cried with this family because they were so accepting of "God's will".  Their little boy is now 3 and they have a little girl 18 mos and just recently had a little boy.  Both of who were conceived without IVF.  I was so touched by this family and how wonderful they are.  I don't think I will ever forget this first experience I had with the death of a newborn.  It made a tragic experience turned into a miraculous one.

submitted by Debbie Smith

     You know the expression "It seems like time has frozen"?  I can truly say that it did.  It all started when my daughter went into labor.  Soon after she was checked in labor and delivery, they sent her walking.  As we entered a long hallway, her water broke.  The first thing that entered my mind was "Where is a wheelchair?".   You know a NICU nurse is going to worry about a prolapsed cord.  I got her a chair and wheeled her quickly to labor and delivery.  They placed her on a monitor and sure enough our baby was having a decel.  They tilted my daughter to the left, put her on oxygen, and everything recovered to normal.  All was well.  Labor progressed without incidence.  I've been a NICU nurse in our unit for an eternity, and developed a close relationship with all my coworkers.  Everyone was on standby should they be needed.  Of course, what are the odds of a NICU nurse's baby, grandbaby, neice, nephew, whatever, not making it to NICU.  I think we worry them into the NICU.  Sure enough, my daughter was complete and ready to push.  As part of my job, I stablize infants in labor and delivery, transport sick infants, and do ECMO.   The clinicians and labor and delivery staff work a lot together, so my daughter's labor and delivery nurse was a coworker and a friend.
     Just as pushing began, Hayli's (granddaughter) heartbeat started to decel.  This was the beginning of time freezing!  The labor and delivery nurse felt the cord had prolapsed.  She applied pressure to Hayli's head to allow blood to flow through her cord.  She called for help.  I called for help from my NICU Attending.  Before I knew it, my daughter was intubated and undergoing an emergency c section.  Hayli's heartbeat was stopping.  I remember leaning on the OR wall, feeling totally helpless, watching everything in slow motion, from my daughter crying and asking for me before she was intubated, to Hayli being carried lifeless to the warmer.  The NICU team took over.  I remember all of us looking at each other and I said "You guys know how I feel.  If you think she'll have brain damage, please don't resuscitate her."  Two of our Attendings along with nurses and respiratory therapists worked on her.  As I look back on it all now, I realize what a heavy burden I placed on my coworkers.  Her heartbeat returned and they took her to the NICU.  At some point there was always someone near me offering support.  We cried together and held each other.  During my family crisis, our unit decided to be in crisis.  We were at capacity.  We had two children on ECMO and our transport team was out picking up another sick infant.  It was my day to work, so someone else was covering.  All our supervisor's were in.  We only run two ECMO's at a time, and fortunately for Hayli, one of our patients was coming off that day.  Hayli developed a pneumothorax and was placed on ECMO within 24 hours.  She didn't have to be transported to another ECMO center. I couldn't imagine having been separated from her.  It's amazing how our priorities change.  The perspective of being  family along with having knowledge makes you so vulnerable.  The night before she was due for her routine cranial ultrasound, I layed in bed crying, trying not to let my daughter hear me.  I just knew she would have a bleed and be taken off lifesupport.  Ultimately, she did have a Grade I, but it did not extend, so we were able to keep her on for one week.  I focused on being a mother for my daughter and a grandmother for Hayli.  I know my coworkers appreciated it, because they made sure I knew how proud they were of me.  I stayed with my daughter and took care of her needs and let them do what they do best  take care of Hayli. She came off ECMO after exactly one week.  She weaned off the ventilator that day.  She went home when she was 10 days old.  Today, she is a very happy three year old, normal in every sense of the word.  Each day that I pull into our parking deck at work, I get overwhelmed.  I feel so grateful that they made the decision to revive her, but also that I can bring this experience into my care for other children and their families.  Our dream for a healthy baby definitely came true!

submitted by Deborah Ann Wall

     Dreams come true and I still can’t believe it did come true.  I started my neonatal nursing career way back 1982.  It is very challenging since I came from a different country and did not have a critical care experience. I love it and became good at what I am doing so I took the Assistant Nursing Care Coordinator position for the NICU.  At that time, I was very much involved with the first NICU reunion planning (NICU graduates coming back to the hospital) at St. Luke’s Roosevelt Hospital, New York. Unfortunately, I transferred to another department and missed the great occasion.  I remember saying to myself that I need to come back and be a part of it.  I missed the babies I took care off and seeing that they grew up and became happy, curious children. Yes, some of them would come visit the NICU and would even show us their hands with the IV insertion remnants.  Amazing!
     My career took me to different nursing positions and different hospitals. Year 2003, I came back to St. Luke’s Roosevelt Hospital as a Nurse Manager for NICU. I was so glad for a lot of good reasons.  First, to be working again with a great team of neonatologist and nurses.  Second a chance to make my dream come true.
     It was Sunday, October 3, 2004 when we had the NICU reunion.  The staff was so excited since it’s been a couple of years since the last reunion and we plan it to become an unforgettable experience for everyone.  We had around 300 people who came and it was so overwhelming because it was so much fun and gratifying.  I commend all my staff for all the work that they did.
     There was a lot of preparation that took place.  First, we needed to go back to the admission log and get the names, addresses of the patients we are inviting (we picked the babies who stayed in the NICU for 2 weeks and more).  This all had to be entered into the computer.  Then, locating the right venue.  Of course, the invitation and the return responses had to be organized and process accordingly.  Then, we had to notify the different hospital department who would be involved.  We were lucky enough that someone sponsored for the refreshments.
     We also redecorated the NICU graduates picture board.  We organized it according to the year the babies were born and made it look like a baby album.  One of the parents said, “It is a work of art and it is so dear and personal to us because we are a part of it.”  Then, we made a story board where we had snap shot pictures of when babies are admitted in NICU and placed on ventilator support, phototherapy, IV therapy, etc. How they were affectionately taken cared of by the nurses holding them and when their parents visited and breastfed them.
     The reunion had a “Halloween” theme and everyone came in costume and if they didn’t we provided costumes for them.  More than 300 people came.  Part of the entertainers was musicians and Dora, the Explorer.  Other activities included pumpkin decorations, arts and crafts and games.  We also included healing experiences for the kids and families.  We had the medical therapy area where they played with the dolls reenacting IV taping, putting on bandages, listening to heartbeat and putting on the smock gown.  They also got the chance to play with the isolette and the most exciting sight was when the parents were sitting in front of the story board and was explaining to their children their own experience in NICU.
     I have to say, “It was a dream come true.” Me, together with my staff are so grateful that we not only help them survive the crisis when they were born but more so now that we got a chance to see them again and have a good time this time.

submitted by Leonora R. Yaun, RN, MA

A Candid Moment
      As most of us that work in an NICU know struggling with the ethics of infants care at the cusp of viability and how aggressive to be can linger in our minds forever. Although saying goodbye is heart-wrenching and can be so painful for parents and caregivers, the children that survive and go on for a life of "high tech " care and the ability of their parents to care for them often haunt  us .What could we have done better? How could the experience have been improved? As we continue our interventions in the NICU, I'm often reminded by one of my favorite expressive staff nurses of a day that will linger in our memories forever.
     Baby girl "B" was born at 24 weeks gestation. Her family was from Haiti and  the team did have time for a brief discussion with a translator regarding extent of interventions in the delivery room. They were clear they wanted "everything" done. Her delivery and initial transition were "typical " for her gestational age. She made some effort to breathe, was intubated, transferred to the NICU and settled in without major incident.
     Over the intitial days of life, we had great difficulty effectively ventilating her, with rising CO2's, requiring  100 % O2 , often without acceptable gases.
     Her head ultrasound was concerning, evidence of bilateral IVH. We were all worried regarding her long term prognosis despite all we were doing. Neuro consults ensued, collaboration with each other looking to optimize or moment ot moment interventions.
     There were many discussions with the family with an interpretor and at the bedside. The mother rarely commented and would look to the men in the family to make the decisions. Despite the team's recommendation to provide "comfort" care, the family continued to want "everything" done.
     The team struggled with their decision to continue. Did they really understand, what could the cultural aspects that we were misunderstanding? How could we get them to understand? They felt it was in God's hands, but weren't we getting in God's way? We struggled with the ongoing plan, supported each other through various measures. We talked to the consults, to each other and to the family.
     The nurses felt her care was futile and struggled to continue caring for her.
     Her condition was very unstable, and she required a nurse at her bedside continuously as she was so lablie....a situation most of us have experienced during our career more often than we like.
     Time went on. The baby "stabilized".
     The family didn't visit often. The father expressed it was too painful for Mom to visit and he felt the need to protect her. This along with the futility of her situation made caring for her even more difficult for the staff.
     Despite all the information given to the family they insisted she be a full code and have "everything" done to continue care.
     We discussed her care in Care Conference as well as our Ethics Rounds looking for stratigies to provide the best care for her, her family, and ourselves.
     One day she self-extubated. I was called emergently to the bedside to respond. Upon arrival she was being hand bagged, heart rate and sats were acceptable. The nurse caring for her was new to neonatology. When I arrived things were in good control. The emergency cart was available and the team looked to me for direction. I asked for the camera. I'll never forget the look on the nurse's face. It was one of shock! I said, let's get a picture of her face without tape for her family, they have never seen her without it. We took the picture of her beautiful face then re-intubated and resumed care.
     Her mother cherishes that picture. She would show it to nurses as they cared for her as she grew, to compare where she had been to where she is now. She would show her to family members and was so proud.
     Baby B lives on....she transferred to a transitonal care facility after leaving our NICU with a tracheotomy and for further care.
     Our "new" nurse is "seasoned" now. We often reminisce about that day. She was anticipating emergency meds and when I asked for the camera she was so surprised. In the scheme of care, we agree it was the correct emergency response at the moment. A picture is surely worth a thousand words!

submitted by Linda Zaccagnini

     I have been in neonatal intensive care for over 25 years and there are a couple of stories that I will never forget, but here is the most recent. Justin was born with a severe congenital diaphagmatic hernia. He deteriorated after delivery and was taken to the NICU where progressed to needing maximum support including a standy by for ECMO. As the ECMO coordinator, that meant I was also on standby. At that time (over 15 years ago) what we could but he had a pulmonary hypertensive crisis and was placed on ECMO. He was very ill on bypass, but slowly weaned off and despite having a severe feeding problem, he was discharged home. I had seen him off and on for about the 1st 5 years of his life at reunions, but had not seen him since. To my surprise I was at a March of Dimes fundraiser about 2 years ago and I heard a young man talk about having one lung and almost dying. It was Justin. He was small, but very articulate and motivational. I did not see him again until a concert this past year at my local high school. There was Justin, playing his French horn in a large orchestra. I saw his parents and then met him. I have heard from some of his classmates that he always tries his best and inspires others to do the best they can. When I look at him at the band performances, I realize why I became a neonatal nurse and how what we do affects an entire lifetime. 

submitted by Terry Zeilinger

Life Lesson’s From Lilee

Love unconditionally
Inspire others
Laugh often
Embrace each moment
Enjoy simple pleasures

     “How do you say goodbye to a child you have just met?”  That’s the heartbreaking question that Rachael found herself asking, as the doctor’s quickly sent her baby away to Children’s Hospital.  She had been instructed to say her goodbyes, because they did not know whether her baby could survive the trip.  Just like that, a young mother’s dream started to shatter, and the hard lessons of life had begun.

     “All of the explaining in the world couldn’t take away the pain of seeing my little baby with tubes all over her body, and a huge incision on her belly.  All I could do was sit by her bedside and hold her little tiny hand.”  As Rachael looked upon her baby, covered with wires and tubes, she thought it was the scariest thing she had ever seen.  She felt terrified, overwhelmed, and helpless, but she wouldn’t leave her side.  On that day, as she held Lilee’s hand, Rachael learned that a mother shows great courage in the face of fear.

     “The nurses could see how badly I wanted to be a mom to her, and they tried to let me do all that I could.  They were there with me the first time I got to hear her cry, the first time she drank from a bottle, and even the first time she pooped.”  The NICU was the same scary place as when they arrived, but while Lilee was growing, so was Rachael.  We were so proud of the confident young mother that she was becoming.  She had a newfound appreciation for the  everyday tasks that most people take for granted, and approached each challenge with enthusiasm.  When Lilee’s final surgery had been scheduled, it looked like her dream of hearing her baby cry in the middle of the night, could come true by months end.

     “I whispered in her ear, telling her how much I loved her and needed her.  You can’t leave me now, it isn’t time yet!  I’m not going to let you go.”  Within hours of the surgery, it was apparent that something was seriously wrong.  A raging infection had consumed Lilee’s internal organs, and left the surrounding tissue without adequate blood supply.  It would take a miracle for her to survive.  Rachael’s knees buckled beneath the weight of her grief, but she refused to give up on her precious Lilee.  She had already fought so hard and come so far.

     “It has been such a roller coaster ride of emotions since this whole saga began.  I think the absolute worst is when I see babies going home, over and over again.  I get so sad and  jealous, I want to break down in tears every time I see a new family leave.”  Lilee had now been with us for more than six months,  and everyone gravitated to her bedside.  She had a smile that could melt your heart, and asked nothing more than to be loved.  She always maintained her sweet disposition, despite the numerous tests, and labor intensive dressing change.  Lilee improved daily, but she remained very fragile.   We weren’t sure what the future might hold for this family, but we knew we needed to try to get them home.  We wanted Rachael to have that opportunity to be the “real” mom that she’d always dreamed of being.  With all she had experienced, Rachael had become the perfect advocate for her child. 

     “I know that she is safe now, she can never be hurt again.  This is the promise I had always wanted to make to her, but   knew that I never could have kept it until now.  We all loved Lilee so much, and know that we can never forget what she taught us this past year.”  The time that they had at home together was way too short, but when you love someone so much, there can never be enough hugs given, hours rocked, or memories made.   

Sometimes, the dream that comes true can better be reflected in the experiences we gain along the way, rather than the outcome of the journey.  It takes the strength, courage and unconditional love of a mother, to be able to accept the less than perfect dream, and make it all that it can be. 

submitted by Kalaine (Kelly) Weatherly

written in collaboration and permission granted by Rachael Carey, Lilee’s Mother